Margaret

And the GP that morning had to said to me, you know, “You have got to think seriously about your husband going into care because he’s becoming impossible to manage.” So I’m afraid it was the wrong way to do it, because I hadn’t looked at any homes, I hadn’t done anything at all, apart from listen to what other people’s experiences were. So I did know a bit about it and I’d been reading different books but so he was in for a week and then they said he needed to be, come out.

Specialists in the major hospital discharge schemes. So this lady came to me and I have looked it up, they obviously still function, and her job was to help me she, because the hospital were saying, “He’s got to go home.” And I realised that he was taking up a bed that he didn’t need. So she was, it, that was very good because she asked me, you know, “Whereabouts do you want to go? What, you know, how far are you prepared to tra, you know, travel?” All this sort of thing. And so she phoned round homes, well it was only four in the end in the area that I wanted to, you know, I felt was within an easy distance [a] I could drive there in the car but if, for any reason, I couldn’t use the car I could get a bus there because, you know, I felt I wanted to visit him every day, so. And then she took me round to the, she made appointments, and so that made it very, very easy for me, that was very helpful, and she was very helpful. But in the hospital they weren’t particularly helpful, the social workers but she was that was very helpful and she gave me some fact sheets and so really I only saw four places so it, I, which wasn’t that good, but three of the others just weren’t at all suitable, I didn’t think, or I, because it was going to be such a sudden, and he wasn’t going to see it, but then because of how he was I don’t think he would have accepted going to see anywhere, whereas because he was in hospital [sighs] I suppose he’d, I think he realised he wanted to get out [laughs].

As I say, but my, my regret is that, although I’d been thinking about the future and Joe to go into care I didn’t want it to happen really I felt I ought to be able to manage myself but, you know, I couldn’t and that was recognising that I couldn’t manage was quite a big step for me and [sighs] I wish I had started looking at homes and thinking about it before it suddenly happened; that would be my, the main, you know, the main thing that I would, I would say, from my experience to, to do more research before you’re suddenly, you know, don’t think it’s not going to [laughs] suddenly things are going to change and you’re presented with the problem of getting full-time care in a, in a care home.

The only thing for me was, the worry was about how I was going to [laughs] how I was going to live but out of that out of the, when the financial assessment was done by Social Services, out of that it did come that I was going to, because of his pension I was going to, because I never worked full-time, apart from the short few years in my life I worked sort of, I don’t know, when the children were small I work [laughs] I didn’t work, I don’t, not very much, and then I gradually, but I never got to full-time again just because I wasn’t, there weren’t the hours available. So I suppose from my point of view I had, we relied on Joe’s pension more than, than mine so, but what came out of that was that I was going to get about £200 a month, which is not much money [laughs] but it was, I was going to be allowed that from Joe’s pension which hadn’t, I, that was a great relief to me that I hadn’t picked up that really in any of the documents that I’d read so I was very pleased about that.

I’ve forgotten something. My daughter said she arranged a free one hour financial, with a financial adviser to, who suggest, wanted to know all my assets so that was very helpful because I was really, and I still am worried about how I am going to, because Joe is he’s not at all well but he’s, he is maintaining you know, he, they look after him [laughs] very well.

The assessments, yes, the financial assessment, now Joe’s money was down to the, below, it was well below by this time that, what they suggested. So out of that came the fact that Joe pays, you know, so much from his pensions, I had to sign an agreement, or somebody had to sign an agreement for, to make up the difference from what social services can pay, because they have a set amount, don’t they, that I don’t know whether it’s the same with each council or not, or whether councils work out their own, I’ve not really found that out because I don’t know anybody in care in any other counties, but this was [County] County Council. So there was so much that, a week that they would fund and if you went into one of the homes they would fund it completely but there wasn’t anywhere near here that had a place that I felt he would be happy, because when he first went into the home he could still move about, he could still walk, and like there was a room up a stairs and had to be a lift, he wouldn’t have had his independence, whereas for a few months he could walk still. It soon went because he then had another episode in hospital when he was in for two weeks and, with pneumonia, and they couldn’t get him out of bed, and he never walked again after that, so. He would have been all right in another room but you can’t change, I felt I couldn’t, he’d got, he’d got settled there and I couldn’t change him.

And then it was about a, almost a year later, he’d been in the home about a year, so I phoned up Social Services because his money had got, he’d used his savings because we’d used it for all the other things that we’d had done in the house and everything as well. So [laugh] I phoned up Social Services [laughs] but, you know, they said, “Oh thank you,” and I never heard anything [laughs] and then, so in the end my son said, “The only thing, mum, is just put it in writing, don’t even send an email, put it in writing.” So I wrote to them and I did then get a...

Anyway so somebody phoned up and made an appointment and came from Social, their finance department, and wanted to see all Joe’s, you know, all Joe’s income any health, you know any insurances he had, they wanted to know in detail what our, what our outgoings were. She didn’t really want to know anything about my income and what I’d got; she did, or she, maybe she did want to know about my income, I don’t remember that. But anyway I had to get all the paper, everything sorted out for her. Very pleasant lady, about two hours she was, she was here.

I did apply for the; what’s it called? That you can get, because of what I’d heard from other people; the NHS continuing funding care you know, if you, they feel you have a medical, more of a nursing/medical need, because it is, this where [husband’s name] is, is just for dementia care, it’s not a nursing home, which again I realise perhaps it would have been better if it was both in that there would have been a nurse in there, whereas if anything goes wrong they have to apply to the Hub, the district nurses, or else to the doctors, so, and; anyway, we had a long assessment [sighs] last year but the outcome was that because it was mostly his behaviour that was a challenge though he has got lots of the medical needs, they weren’t the, they weren’t the challenge. But I do feel that it does vary because, because I have kept in touch with some of the group; some of the people have had everything paid [laughs] and others haven’t it is very strange but it’s, it’s just how it is.

But when I went there I noticed that they were also advertising dementia cafes via the Alzheimer’s people; so that’s when I really, we started, with reluctance on my husband’s part, to go there, and he mostly just sat there, he, whereas the other fellows and that; they were mostly men, which was quite good, that had the, that you know, so I was able to talk to other women really and that was, that was most helpful, and also the workers themselves.

But this is how it works though; you see if I now, so I have changed my will but [husband’s name] can’t have changed his will because he’s got dementia, but I changed my will so that the, it goes to the children, OK? So that if I die before [husband’s name] the house has to be sold but the children only get sort of half of it and the other half then he will have to, because he will suddenly have a lot of money he will have to start paying the full amount again out of his money. So, you know, people that are savvy had to change their wills before so the they didn’t leave it to each other, they left it to the [laughs] I don’t know, with a clause; you can have a clause in that says if they’re still alive then they, or something, I don’t know. But you can, legally you can round all this but we weren’t savvy enough.